One in Ten Thousand: For the Love of Lee, a mother's story.

By Linda Ruth

"One in Ten Thousand" is a captivating story that details the life, trials, and challenges of Lee Ruth, an autistic individual, as seen through the eyes of his mother, his advocate, champion, and caregiver. Vulnerable, real, and compelling, this book focuses on the struggles, adversity, perseverance, faith, and love, that have been hallmarks of his journey. Lee's story is heartwarming and hopeful, and is meant to inspire and encourage other mothers and caregivers who live with similar circumstances.

As a child, Lee struggled. When he was diagnosed with autism in 1976 at the age of three, the rate of autism was one in ten thousand children. Today, that number is one in fifty-four. Throughout the book, Linda Ruth details the adversity and struggle of his early years and his callous diagnosis. This is a must-read for all who have a loved one with disabilities. In these pages, you will embark on a four-decade-long journey of a normal American family who does everything in their power to support their child despite profound challenges. In the end, there is always hope, and there will always be a better tomorrow.

• Language: English
• Publisher: BookBaby
• Release date: Jan 31, 2022
• ISBN: 9781667820132

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One in Ten Thousand

©2021 Linda Ruth

All rights reserved. This book or any portion thereof may not be reproduced or used in any manner whatsoever without the express written permission of the publisher except for the use of brief quotations in a book review.

Print ISBN 978-1-66782-012-5

eBook ISBN 978-1-66782-013-2

This book details the life, trials, and challenges of Lee Ruth, as seen through the eyes of his mother, who is his advocate, champion, and caregiver. Lee struggled as a child when diagnosed as autistic in the 1970s. This book captures the struggles, adversity, perseverance, love, and hope that have been a hallmark of his journey to living a fulfilling life.

This book is dedicated to Zach, Ben, Abby, Brady, and Colin. You are my reasons for writing. Always believe in miracles.

Contents

Preface

Chapter 1: The Perfect Family

Chapter 2: Is He Retarded?

Chapter 3: Quick Cure?

Chapter 4: Who’s to Blame?

Chapter 5: Our Attempt at Normal

Chapter 6: Illness as a Cause or as a Symptom?

Chapter 7: School’s in Session

Chapter 8: Rays of Hope

Chapter 9: Get to Work!

Chapter 10: Dear God, How Much Can We Take?

Chapter 11: Coping through Work, Miles, and Friendships

Chapter 12: A Square Peg in a World of Round Holes

Chapter 13: Yield to a Higher Power

Chapter 14: Lee’s Version of a Cure

Chapter 15: Moving Out

Chapter 16: Contributing to Society

Chapter 17: Reflection and Hope

Afterword

Acknowledgements

Preface

"The journey of a thousand miles begins

with a single step."

–Lao Tzu

A random call from my older brother changed my way of dealing with my son’s autism, Go for a run, he told me. Go for a run? How could I possibly find a minute, let alone ten minutes, to run and for what purpose? It will help clear your mind, he said.

At the time, my mind was heavy with worry. My youngest son was eighteen months old; my oldest son was seven years old; and my middle son, Lee, who was almost five years old had been diagnosed with autism two years earlier. I cried often. I didn’t want my children to see me struggling, so I retreated to my bedroom for a few minutes to take a deep breath and gather myself. The demands of early-childhood-intervention therapies, child-psychiatry appointments, and fear for Lee’s future, on top of the typical day-to-day needs of raising three little boys, were taking a toll on me.

I always admired my older brother. He jogged regularly and was an outstanding athlete in high school. So, one day, I laced up an old pair of tennis shoes and ran one lap around our yard, about a quarter mile. I came back into the house panting, my legs feeling like rubber. I struggled to take a load of wash downstairs. I was exhausted, but surprisingly I felt good enough to try it the next day and then the next, always feeling a bit better when I finished. I noticed it really did help to clear my mind. I didn’t feel as defeated. I realized jogging was actually helping me feel better in a subtle way.

Little-by-little, step-by-step, running the next day and then the next was the beginning of my twenty-five-year love of running. It reflects the way I have coped, all of these years, with my son’s autism.

As a little girl growing up in middle-class suburbia, I was always a competitor. Not the type of competitor who had to win, but the type of competitor who put her nose to the grindstone and gutted it out. Like running, I was always willing to go the distance. Little did I know I was preparing for my life ahead as the mother of a child with special needs.

Through my fun-loving childhood and the influence of my father, with all the laughter and funny antics, I learned to see the light and humorous side of life’s situations. My hard-working parents, first generation Americans of Polish immigrants, ingrained a faith and a genuine love of family that set the foundation in my quest in dealing with my problems in years to come, problems I never even knew existed at the time.

What is autism?

Navigating autism in the late 1970s and 1980s was not easy. Only a handful of specialists had even an inkling of what was going on. Lee’s diagnosis came in 1976, a time in autism’s history when many so-called experts still cruelly blamed mothers for causing this disability. The theory was that emotional trauma from cold and rejecting mothers triggered children to protect themselves by turning inward. Everyone now knows that the truth is quite the opposite: the undying love of mothers of autistic children is what kept the quest for answers alive since the earliest diagnosis of this puzzling disability, and it is what led to the understanding and acceptance of autism that exists today. I recognized early on that to help Lee, I was going to have to be the one to search for the answers.

This is the story of my undying love for Lee. It’s about my refusal to accept Lee’s diagnosis of autism, when one child in ten thousand, instead of today’s one, in forty-four, is diagnosed. It’s a story about refusing to submit to the status quo and fighting to ensure Lee’s rightful place in this world. Above all, this is a story about what I wish someone had told me those many years ago when my son was first diagnosed, and what I want mothers just beginning this journey with their autistic child to know.

Everything will be okay. Prayers will be answered, just not on the time line you’re looking for. The poignant beauty of these children will open your heart and transform you as a person in ways you will never imagine. Trust in your personal judgments, ability, and power will be your biggest ally; pride is more powerful than shame.

Raising a child with autism is important work. Aside from your job of helping your child be his or her best self, you have another important responsibility: to be a role model of tolerance, compassion, and acceptance in a society all too inclined to judge and discount the disabled among us or those who are called different in any way. Gandhi is credited with saying, you must be the change you want to see in the world.

Yes, raising a child with a disability is hard and exhausting. It’s a marathon, not a sprint. But just as running cleared my head, autism opened my heart. While I will never know what Lee experiences inside his head, I do know we share a precious connection to the experience of humanity, to profound love, and to a life worth living.

Chapter 1:

The Perfect Family

I grew up in the 1950s and 60s, formed by loving parents in a Catholic environment. Saturday weekly confession and Sunday mass were not an option but a commandment in our home. We were faithful in our obligations to our beliefs, whether it was having meatless Fridays or observing all Holy Days. We didn’t read scriptures or pray outwardly, but it was a silent devotion that made a big impression on me.

My parents were a product of the Great Depression. Neither of them went beyond a ninth-grade education, but I never felt that they lacked intelligence. They were both hard working and they felt fortunate to work their jobs in the factories. My mother wanted to help my father provide for my two brothers and me, so she chose to work outside the home, which was unusual at that time. I was responsible for much of the housework, as my mother worked so many hours. We had what we needed in life. I was very content and appreciative for all they provided. More than the material objects were the feeling that all three of us siblings were loved. They trusted us, and encouraged us in school and with our sports. They were always there for us.

When the swimming pool was built in our community, it became my home away from home in the summer. I found my independence in those summer days. I spent hours and hours, either practicing with the swim team or hanging out with a fun group of school classmates. We laughed and laughed all the time, always enjoying each other’s company. They are still my friends to this day.

Athletics were so important to me growing up, whether it was swimming, field hockey, or basketball. I loved everything about competition.

After graduation from high school, I went into the business world, trying to work my way up to a secretarial position.

My husband, John, and I met on a blind date in the fall of 1968 that was set up by a mutual friend. I was twenty, and he was handsome and older at twenty-six. We dated for seven months, got engaged, and then married in the fall of 1969. Young and in love, we had everything wonderful in life before us.

We came from two totally different backgrounds. John was one of nine children who lived on a farm in a nearby community. His family was German, dating back to the early days of Pennsylvania. I would say they were serious, hard-working people. They were a very tight-knit family, and they enjoyed themselves in a quiet manner in comparison to my gregarious, outgoing Polish family. We really were quite different from each other. We were opposites in many ways, but very much in love with each other. We’ve worked through many differences in parenting styles over the years, but one constant was our love and devotion to each other and our three sons.

We were blessed with our first son, Matthew John, in 1970. Intuitive with tremendous interest in the world around him, Matt performed all